This is very long, but I would like some input.

Just to give you a few reminders, I am a cancer survivor. I had Acute Myelogenous Leukemia in 2004 and had a bone marrow transplant. Due to complications from the transplant, I am permanently disabled. I do have chronic pain and my meds are really numerous.

I have had chronic pain ever since my bone marrow transplant. I spent a total of seven weeks totally bedridden, I was on a vent for 2 1/2 weeks and didn't talk for over 2 months (9 weeks or so). I had to re-learn how to swallow, and how to walk again after I had treatment.

When I ended treated for my cancer, I weighed 167 pounds. I am 5 feet 4 inches tall, so I was considered obese and technically still am either obese or at least overweight.

I started out on pain meds at the lowest levels of oxycodone (5 mg as needed). That was in December of 2004. I continued with my oncologist/hematologist prescribing my meds until I was referred to the pain clinic in August of 2007. Since then my doses of pain meds have just steadily increased.

Just since December of 2012 (I was on Oxycontin 80 mg twice a day and 30 mg oxycodone twice a day as needed for B/T). This is now June of 2013 and my meds have been increased to Oxycontin 80 mg three times a day and 30 mg of oxycodone up to 4 times a day as needed). Also for nerve pain, I take 400 mg of gabapentin 3 times a day. For depression and nerve pain I take 90mgs of Cymbalta daily.

Other meds that I have tried and have had problems with were Fentanyl patches, lyrica and morphine. In addition to being allergic to the toradol, I am also allergic to codeine, penicillen and sulfa drugs.

My weight varies significantly. In August of 2012 I broke my left shoulder, I weighed 184.
Sep 2012 190
Oct 2012 185 and 192 - normal bloodwork except for kidney function (it is elevated)
Dec 2012 on Christmas Day I passed out and hit my head and I had hyponatremia and (abnormal bloodwork) White BC high, Red bc low, hgb low, hct low, neutr% high, lymph% low
Jan 2013 188
Feb 2013 172 loss of 16 lbs - Feb 17th I nearly passed out and I had hypokalemia - I also broke 2 bones in my left foot
Mar 5th 2013 180 lbs (gain of 8 lbs)
April 3, 2013 163 lbs - another loss of 17 lbs
June 5, 2013 161 lbs - steady for 2 months (yeah!!)

Over the years I have tried many different treatments - steroid injections in both hips and lumbar spine in Feb and Mar 2010 - they didn't last but a few weeks. Cognitive behavioral therapy, progressive relaxation and acceptance based strategies with psychological counseling during 2009, 2010, 2011 and 2012. I have also had physical therapy.

Since I am allergic to toradol my pain doctor will not RX any types of creams for me to use. I have used the cream put out by tylenol in the past and it seems to help the pain some but for some reason I can no longer find this cream. The other OTC creams don't seem to help nearly as long or as well.

I am not trying to make my pain go totally away, I am just trying to get it to a level of 5, right now even with my meds, it is at about a seven or eight daily. I cannot tolerate ice at all. The heat does increase my pain as well as when it is rainy and dreary out all day. I tend to feel like I am swelling in the heat and it really affects my breathing. But, when I test my limbs for swelling, I do not see any.

I have had all different kinds of testing - MRI's nearly every year of hips and lumbar spine areas. I have degenerative changes with an annular tear in my lumbar spine with multi-level disc bulges and some narrowing of the neural foramen. There is also CSF (Cerebrospinal fluid) around nerve roots. In the hips I have calcific tendinitis.

November 2010 I was diagnosed with Small Fiber Neuropathy in my legs. I also had an EMG that was normal.

Do you have any ideas on anything that will help? I also have a very good recliner that helps with the chronic pain as well as using a heating pad during times of higher pain in my lumbar area. My chronic pain is in my lumbar back as well as my hips and legs. I have alternating pain and numbness in my legs and feet.

Due to my kidney issues, the doctors will not let me take any OTC anti-inflammatories or any RX anti-inflammatories.

I do want to say that my pain doctor has absolutely no problem with RX'ing my meds at this level. I am the one that wants to cut back on them and I have actually started to do so myself, and my pain levels have actually stayed the same with me cutting back on the meds.

Thank you so much if you have bothered to read all of this and if there is anything you can possibly think of that may help. I have thought of trying hydrotherapy, but I do not have any access to that anywhere locally. Also, I have not tried accupuncture because I cannot afford it.

Thanks again,
Trudy

Hi Trudy, something that comes to mind with the small fiber neuropathy is perhaps increasing your Gabapentin. You still have room for increases with it and perhaps this would give you some relief. Small Fiber treatment seems to be the same as most nerve related illnesses. Just a thought and something to think about. Take care....Susie

Yes, I have done traditional physical therapy. I have also done and still do yoga and stretching. The heating pad does help some with my back pain during times of higher pain is when I use it instead of taking B/T meds.

Morphine does not help my pain, no matter what dose they have tried on me. Fentanyl does help my pain but I had major problems with the patches sticking and getting rashes from the adhesive. I was on 75mcg and switched every two days and eventually went to 100 mcg and switched every two days. It does work for my pain but with the heat in Ohio, it has dumped too much of the fentanyl into my system at times and scared me to death so I asked to be taken off of it.

I have not tried a tens unit, as none of my doctors have recommended it. That may be something that I will ask about.

I cannot go any higher on the gabapentin as it does affect the kidneys. With me last raise of gabapentin I went from 1.4 to a 1.7 and normal is 1.1, so the doctor called me and said we could stay at the same level, but we cannot increase it due to my kidneys.

Lyrica made me gain 30 pounds in the space of 6 weeks and does not help the pain as much as gabapentin.

My chronic pain is both nerve related and deep muscle related - sometimes it feels as if the pain goes all the way to the bones in my hips.

Hope this answers all of the questions.

I feel as if I have posted most of my medical history on this site now, LOL. Hope all of you don't mind.

Trudy

Trudy usually a physical therapist fits people with Tens Units. Initially the unit is rented, if it works for the person then they try to get the insurance to buy the unit.

Susie

Thank you all for your input! I know that my post was extremely long, but I was trying to give as much information as possible.

At my last doctors appointment, I had her write a referral to physical therapy for me. I had not gone to or set it up until I posted here.

I had my first return physical therapy appointment yesterday (Tuesday) and will have my second on Thursday. I did inquire about a TENS unit and they did not have one available to try. They did have a stim, which I assume is a stimulator. The PT said to keep the settings between 1 and 10 as that is more like what a TENS unit settings were.

Does anyone know the difference between a Stim and a TENS? If you do, can you explain how they differ?

Since I am already doing some stretching and yoga at home on my own, they didn't have me do any of that but I was told to continue as it will help. She did show me some exercises that are very low impact and will help strengthen my lower body as my legs are still fairly weak.

This PT did outright tell me that she has never treated anyone that has as many different health issues as I have. I do believe that she wanted some time to research some of my diagnoses so that she may treat me better.

Trudy

I will talk with my doctor about possibly switching meds around. If she doesn't want to do that, I do still want to reduce the doses that I am on as I have managed to do that myself and stay on lower doses for over a week now with no increase in the pain levels. My next appointment isn't until July 31st.

I will ask the physical therapist to send a request to my doc for the RX for the TENS unit. My next appointment with her is Tuesday July 2nd.

I am not exactly sure what she hooked me up to. She just referred to it as a "stim". It was attached by lead wires and did deliver electrical impulses, then they covered that area with a large moist heating pad. She did mention that they needed to keep the level of the stim between 1 and 10 because that would be closest to a TENS unit as they have the same settings. I really wish the painful areas on my body weren't so numerous and spread out!

The physical therapist said we would try the TENS unit and then we would try the hydrotherapy. She is finding the closest place for me to do the hydrotherapy as they do not offer it at their offices.

Thanks so much for your input!
Trudy